Ask anyone who’s battled breast cancer, and that person will tell you the experience changes lives.
The long treatments can be incredibly difficult, both physically and mentally. It’s terrifying to not know what is going to happen. But breast cancer, even stage IV, is not a death sentence.
Though doctors do everything in their power to prepare patients for the struggles they’ll face, everyone who has fought breast cancer can point to things they wish they’d known from day one.
What should you know if you’ve been diagnosed? Take this advice from three extraordinary breast cancer survivors, and learn from their experiences.
Kim Barnhart of Pickerington was diagnosed with Stage III breast cancer in 2010, and it eventually spread to her lungs and bones and progressed to Stage IV. Today, she has been through chemotherapy, a mastectomy, various pills and hormone therapy. While she still is fighting her battle with cancer, she is a group leader with the local chapter of the Young Survival Coalition, supporting others in their own journey.
Susan Zanner of Bexley was never sick a day in her life before her diagnosis. In her first round of cancer, she went through a mastectomy, eight rounds of chemotherapy and 28 days of radiation. After being cancer-free for a while, her cancer metastasized dramatically, but she continues to fight her battle with optimism and humor.
Medha Sutliff of Newark was diagnosed at only 27 years old with Stage 0 ductal carcinoma in situ. She was cancer-free for 10 years after that, thanks to a surgery to remove the cancerous tissue, but then was diagnosed with an invasive tumor in the same spot. This time, she underwent a mastectomy and chemotherapy to prevent it from spreading. Sutliff is now regional field manager for the local Young Survival Coalition. Her goal is to give back to the community, and to help cancer victims have the support they need.
Barnhart advises cancer patients that joining a support group is imperative, as members understand exactly what you’re going through. You can talk about anything from treatments to how you’re feeling mentally. It is important to find a group of people who relate to you. Sutliff tried several support groups before she found one that fit her age and life experiences. Zanner found her group through her local minister and the chaplain at the Stefanie Spielman Comprehensive Breast Center.
In addition to traditional support groups, a patient may also find an online forum or chat group, a phone support line, or a mobile app. These have the advantage of offering nearly 24/7 support, even if they’re a bit more impersonal.
“I think that it’s the most beneficial to meet in person,” Sutliff says, “but that’s not always easy.”
From a medical standpoint, being aware of what exactly your treatment entails is important. While you may understand the basics of something, ask your doctors to walk you through each process. Having an understanding of what to expect can ease some of your fears and will ensure that there are no surprises later.
Because cancer treatment involves more than just one doctor – radiologists, oncologists, plastic surgeons, etc. – wrapping your head around that long list is key.
“I really believe this,” Zanner says. “When you have a critical diagnosis, walk, don’t run, to move all of your doctors to one medical system.”
Having all of your doctors in one place or one medical facility means all will have your medical records on hand all the time, and doctors can talk to one another and keep track of all aspects of your treatment. It can also keep lines from crossing. Barnhart says talking to all of her doctors up front, instead of separately, could have prevented certain difficulties in her own treatment.
Though doctors sometimes recommend mastectomies as part of cancer treatment, the procedure can be emotionally jarring, so learning to deal with it is important.
“I found it very difficult to go through life with one breast,” Zanner says. “In order to wear clothes, a bathing suit or just gym clothes, I always felt out of balance.”
There are options for women who feel uncomfortable after a mastectomy. One is reconstructive surgery by a plastic surgeon. It’s a viable option for most women who have undergone mastectomy, but it’s also arduous.
“A lot of your nerves aren’t there, but it is painful, and there’s a real pressure,” Sutliff says. “It’s difficult to sleep.”
Despite the long process, Zanner and Sutliff both chose reconstruction because it made them feel more normal and balanced.
Barnhart had a different experience. After deciding that reconstructive surgery was not for her, she called on Hope’s Boutique – the Spielman Center’s in-house boutique intended to help women look and feel their best during treatment – for prostheses.
“Some people are afraid to get them because they’re afraid they’ll be heavy,” she says. “But they feel normal. When I got the prosthetic, it really helped to balance out my back.”
Barnhart found additional solace in classes targeted at cancer survivors, including yoga, water aerobics and other educational offerings. Zanner’s peace of mind was enhanced by raising money for organizations that support cancer treatment and writing about her experiences in her blog, which is part of www.caringbridge.com.
Finally, Sutliff advises patients to consider the impact a cancer diagnosis may have on loved ones. Families of cancer patients endure changes, stress and difficulties during the process as well. Sutliff believes that family support after a cancer diagnosis is something that should be addressed long beyond the diagnosis and cure.
“My husband is extremely capable, extremely supportive, but there are long-term effects with cancer that take years to get through,” Sutliff says.
Taylor Woodhouse is a contributing writer. Feedback welcome at gbishop@cityscenemediagroup.com.
